Communicating with anyone who has cognitive impairments can be difficult. It can be even more challenging if the person with cognitive decline also has Parkinson’s disease (PD). In the later stages of PD, the combination of cognitive changes, such as cognitive decline or dementia, and physical symptoms, such as lack of facial expression, diminished voice quality, and limited body language, can make it especially difficult to connect and have a conversation with your loved one.

Talking about dementia can be frightening. It is very important to remember that not everyone with PD will experience cognitive changes. While over half of people diagnosed with PD do experience a degree of cognitive decline, not all among these go on to develop dementia. As will all symptoms of PD, everyone is different.

The following are some of the symptoms of advanced cognitive decline and/or dementia that can get in the way of interactions and communications with the person you care about:

  • difficulty concentrating
  • difficulty with planning and sequencing tasks
  • changes in perception
  • altered judgement
  • slowness of thought and in expressing thoughts
  • problems with word-finding
  • difficulty following conversations in large groups
  • difficulty understanding the emotional meaning of a conversation
  • difficulty changing topics quickly, or losing their ‘train of thought’ when talking
  • visuospatial difficulties (such as conceptualizing things in 3D)
  • forgetfulness and difficulty with retrieval of learned information
  • behavioural changes (such as aggression)
  • language deficits (including finding words, articulation, volume, and tone)

The skill that is often impaired first is the ability to think of the right word. People may struggle to put thoughts together and require more time to organize and communicate their thoughts.

Another skill that may be impaired early on is the ability to understand complex sentences and concepts. A person’s contributions to conversations are often affected. The person may not try to explain original thoughts or insights, and their breadth of topics for conversation may be narrower. As PD advances, these communication skills may worsen.

 

Enhancing Communication

Speak slowly, clearly, and carefully. Speak to the person as an adult, but make a conscious effort to speak slowly and clearly. Use simple words and short sentences and say exactly what you mean. Minimize implied messages to make a point. For example, rather than saying “it’s raining again,” say, “it’s raining, so we can’t go out for a walk.” Use real names instead of pronouns, to remind the person who you are speaking about. Also be careful with teasing or sarcasm, which can be easily misunderstood.

Ask closed questions. Closed-ended questions, which elicit a “yes,” “no,” “maybe,” or “I don’t know” answer may be more effective than open-ended questions. For example, “are you okay?” may be more effective than “how are you doing?”

Be aware of non-verbal communication. This goes both ways. Be aware of the tone of voice and other forms of non-verbal communication, such as facial expression and body language. Do not, however, rely on non-verbal communication to clarify the meaning of your message, as the person you are speaking with may not intuitively understand what your tone of voice, body language, or facial expression means. Always verbalize how you are feeling, as well as what you are thinking.

Show and talk. Use actions and gestures as well as words. For example, if you are going out for a walk, motion towards the door, or bring the person’s coat to illustrate what you mean.

Repeat important information. If you are uncertain that your message was understood, repeat it using different words. Also try summarizing segments of your conversation. If the person seems to have lost their train of thought, clarify what was being discussed (e.g.: “We were talking about going out this evening. Would you still like to go out?”)

Encourage exchange. Make conversations a two-way process that engages the person. Avoid interrupting or answering questions directed at the person with PD, which may discourage them from communicating. Be patient. Assist them with finding the right words if they seem to be struggling.

Take your time. PD may slow someone’s ability to respond or react. Be positive and reassuring, and give ample time for the person to respond to you. For social situations, come up with and agree upon some cues that you can give the person with PD so that they can participate in conversation. Examples include fillers, such as “John and I were talking about this the other day, and he had the most interesting point. John?” Using fillers and other cues allows the person with PD enough time to process the conversation and plan their contribution.

Choose the best time to communicate. “Off” periods (when medication is not managing symptoms effectively), excessive daytime sleepiness, and periods of anxiety and depression may not allow for effective communication.

Set the stage. It can be difficult to communicate if there are distractions. Turn off the TV or radio, and avoid multi-tasking so you can focus on having a conversation. Also simplify the environment by, for example, finding a secluded corner to have an intimate conversation. Avoid large groups when possible, and encourage conversations with one or two people at a time.

Keep to a regular routine. Maintaining a regular routine can help reduce confusion and stress for the person with cognitive impairments. Keeping to a consistent schedule for meals, visits, and surroundings can provide more opportunities for a comfortable conversation.

Get the person’s attention. Some ways of getting the person’s attention include slowly approaching and facing them, or gently touching a hand or arm, and waiting until they seem to be ready to listen. Making eye contact is very important, and appropriate physical contact may be reassuring. If you notice problems getting the person’s attention, make sure to rule out hearing or vision problems. Make sure that both you and the person you care about have had vision and hearing tests, and are wearing the appropriate hearing aid or glasses, if required.

View communication as a partnership. Be mindful that you both have a role in making communication successful. Avoid frequent corrections of errors made by the person with PD. Also be aware that adapting to disease-related changes, and learning new ways to communicate take time. Be patient with yourself and the person you care about.

Remember, your loved one with PD is still the same person they were before they developed cognitive impairments, and they have the same feelings and needs as they did before. Sometimes, the best thing you can do is just listen and show that you care.


Last updated: January 23, 2024